Non-profit funding sight-saving research for children
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Follow A Race Against Blindness research funding, inherited retinal disease developments, community stories, grant announcements, and updates from families racing toward sight-saving treatments.
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University College London named Dr. Victor Hernandez, co-founder of Axovia Therapeutics, to its 200 Faces. In thanking the people behind his gene therapy for Bardet-Biedl syndrome, he singled out A Race Against Blindness.
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Every dollar below has been paid out to research, made possible by the generosity of our sponsors and donors. Real people making an impact on saving children's eyesight.
total research funding, fully paid out · as of October 2026
$3M awarded
To fund the preclinical development and regulatory preparation of AXV-101, a gene therapy for Bardet-Biedl Syndrome type 1 (BBS1), advancing the program toward its first human clinical trial.
$1M awarded
To support clinical development of the first-in-human trial, including trial preparation and regulatory progress following clinical trial clearance.
$2.1M awarded
To close the remaining funding gap required to launch the AXV-101 clinical trial, enabling the study to begin in early 2026; and, through a grant to the Foundation Fighting Blindness, to fund early-stage gene therapy research with Dr. Thomas Mendel and gene-agnostic therapy (NACA) aimed at slowing vision loss in RP. A matched donor brought in an additional $775,000, bringing the total impact of that grant round to $1.55M.
Founder Spotlight: Steve Johnston, MD, MBA Steve donated the very first van that launched our sweepstakes, and he continues to lead with dedication as a father, physician, and entrepreneur. Still working full-time as a radiologist and taking no salary, Steve devotes his days to building A Race Against Blindness and driving hope for families affected by Bardet-Biedl Syndrome.
Read moreBlog Series: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness Article 4: Why We Use Fundraiser Sweepstakes to Advance Our Mission
Read moreEver wondered why A Race Against Blindness isn’t rated yet by Charity Navigator? It’s simple: they require three years of IRS Form 990s, and we were established in 2023. While we wait, we’ve earned Candid’s Platinum Seal of Transparency and publish full Annual Reports — so you can see exactly how we operate, spend, and impact lives.
Read moreBlog Series: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness Article 5: Our Commitment to Transparency & How You Can Verify Us
Read moreHave questions about A Race Against Blindness or our fundraiser sweepstakes? This hub page gathers all five articles from our Trust, Transparency, and Our Mission series — covering our story, our legal compliance, our real winners, and how you can verify us. Blog Series Hub: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness Article 1-5 linked here.
Read moreBlog Series: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness Article 1: Who We Are & Why We Exist
Read moreBlog Series: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness Article 3: Winners & Where to Find Them
Read moreBlog Series: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness Article 2: How Our Fundraiser Sweepstakes Work — And Why They’re 100% Legal
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